Archive | September, 2011

Trio Diamonds…

29 Sep

Hello everyone.

Got some more samples through the post today, this time I got some products from Trio Healthcare – Adhesive Remover Spray & Wipes, Skin Barrier Spray & ‘Diamonds’.

I’m having problems with “ballooning” at the moment, on a night really and fingers crossed no problems with it in the day. I get up at least once in the night to empty the contents of my bag (wind as well – lovely!) and don’t usually manage to sleep until around 2am since my sleeping pattern got out of routine in hospital etc. Even then with emptying it before I go to sleep I still find that every morning the bag is full to the brim of excess wind and it’s becoming a more common occurence that I wake up with the bag partly off on a morning and a lovely ‘fragrant’ smell in the room, which immediately makes me think “ah, I sure know what that means!” *sigh* and gets me fully awake as quick as a flash in fear that the bag contents are all over the bed. Luckily, the past few times it has happened my body has woke me up before a mess has been made and I’ve managed to shower and put on a new bag…I guess there’s one advantage – I aren’t lazing around having a mega lie-in! Haha, but sometimes I could really do with a lie-in seeing as I get about 6/7 hours sleep a night if I am lucky. I’ve tried keeping a food diary to see what foods could be contributing to my wind problems, but the past few times I’ve even tried not eating before bed it has not made much difference. I’m getting a little fed up with it to be honest, it is almost at the point where I’m scared of getting a long sleep in fear of the bag coming off. Luckily, I sent my prescription off today for my supplies with more things on it this time. I have some security frames/flange extenders coming for my bag which does help with the sticking thankfully, so will use these on a night as I only have 1/2 left from my free sample collection! 😀

Besides the security frames for extra confidence in my bag’s stickiness, I got some ‘Trio Diamonds’ free samples delivered:

They are little sachets that you put into your bag after you’ve drained it which are meant to help:

a) control odour

b) gel the consistency of the waste so it is more manageable to empty and doesn’t stick the bag together

c) to reduce a lot of or prevent ballooning.

I put one in my bag after draining it a few hours ago & it sure has changed the waste consistency into gel, I can feel it through the bag lol! 😛 I have got a bit of wind in my bag, but hopefully it won’t be too bad in the night, will have to empty this lot soon then put another one in just before I go to sleep and see what happens! Hopefully my bag will still be intact with the help of a security frame too…Fingers crossed!

xxx

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Update on my appointment…

28 Sep

My appointment with the Prof went absolutely fantastic! He was really pleased with me & said I don’t need to go back to see him for 6 months all being well & that he really thinks I will continue to come on in leaps & bounds fingers crossed. I also knew after my operation that he had saved my life literally but he did say to me that I really made him sweat in theatre 😀 So I still am forever grateful to him & the surgeons & I couldn’t stop saying thank you.

Stacey is doing well, she has shrunk to about 23mm now, however she is being more windy at the moment and I’m sure this is down to my diet as I’m trying more new things these days that I haven’t had in years or since before my operation.

Hope everyone is well, got a jam-packed few weeks coming up!

Night x

Tomorrow is…

22 Sep

time for my post-op appointment with the Professor who led my operation. I remember thinking just over 6 weeks ago when I had had my operation that I just couldn’t imagine what life would be like 6 weeks from then & I really couldn’t imagine myself as well as I am now, but it just shows, here I am! 🙂 Going to see one of the Stoma Nurses who looked after me in hospital as well just to get my stoma size checked etc as my main Stoma Nurse is away. Will keep you all posted on how it goes!

I’ve achieved more again this week 🙂 Drove for the first time post-op, it felt amazing seriously, I felt such a nerd! Haha! Also went to one of the Dansac ‘Voice’ roadshows for ‘ostomates’ at York Racecourse, had a fantastic day and met some truly inspirational people. I even had my nails done & eyebrows waxed for free! 😀 Went around the ostomy stands, got lots of freebies and products to try and even got asked for my details by a few people on a few stands regarding me possibly doing my own section on a website in future for young people with an ileostomy. I didn’t meet any other people around my age with an ileostomy at the event, I think I was the 2nd youngest there altogether, but I guess people have work and they may not have been able to make their own way there if parents were working or they had school, for example. Will also hopefully be signing up to the Ileostomy Association (IA) online soon and going to the York IA Meet towards the end of October 🙂

The roadshow put on a play all about from before the diagnosis of the main character’s IBD, right the way through her terrible journey with the disease and followed her through her surgery experience and how her life changed and the adaptations she made afterwards to embrace her new body and ileostomy and ileostomy bag – What a truly moving play! It was like the past 12/13 years of my journey with IBD condensed into 1 single hour – just about every thing I could relate to and I got great relief from knowing that it is perfectly normal to have your emotions all over the place and feel totally at war with yourself when every thing seems like it could not get much worse at certain times on the IBD rollercoaster! I went with my Dad, & he was very emotional throughout it as the play also demonstrated what it was like for family & those around the main character & that they too were very affected even though they were not suffering in the same way as the main character. They too had their own type of suffering & it was their journey too. My Dad was nearly in tears on a number of occasions because the play was so close to home.

It just shows that even though I could never imagine myself being able to cope before I had had my op when I knew it was all set in stone (even before I had the date set tbh), that with positivity and amazing support, WE ALL CAN DO IT 🙂 & the play highlighted that just because you have to have an ostomy formed, it does not mean it is the end of your life but it is infact the start of a new better life, probably a life which you have never had before to such a good quality – pain-free, enjoying your food and not spending hours in the bathroom in crippling agony or being on loads of pills which give you endless side effects and you still feel as fatigued as ever even when doing absolutely nothing because you physically and mentally can’t!

Take Care Everyone!

And I may even post a video soon when I get a spare hour or so.

 

09/09/2011

9 Sep

= 1 month since my operation! = 1 month with Stacey 🙂

I appreciate Stacey more each day as I accomplish even the littlest things that I couldn’t do before with Crohn’s Colitis. I’m not going to sugar coat it for anyone and say that it’s been an easy month because it hasn’t, it has been the hardest month of my life by far and there’s been a lot to get my head around, but things have got easier day by day after the first 3 or 4 days after my operation and the amazing support I’ve had around me has made me where I am now; the Prof whose care I am under, the team of bowel & colorectal surgeons who carried out my operation, the 2 lovely stoma nurses who have been with me since the start of my ileostomy journey months before surgery was carried out and 1 of which I am under the care of now still, she is absolutely fantastic & one of the most lovely people I have had the pleasure of meeting :), the theatre and porter staff who kept me smiling whilst I was waiting for my operation and came to see me 4/5 days after the op to see how I was, the anaethetists, the doctors and 3 nurses on the ward in particular, the student nurses who were really good to me on the ward, the inspirational people I met in hospital and the people I’ve stayed in touch with since I’ve come home and the ladies who brought me my cup of teas! Most of all, my amazing Mum & Dad, my fantastic brother & our 2 doggies, the few true friends who have come to visit me or/and kept in touch and genuinely showed they care & the inspirational “ostomates” I have made 🙂 Support has led to my strength which has enabled me to be positive and stay positive. Of course, I have my down times, it’s natural, yet I always tell myself when I am down that I have it way better now than I can ever remember in my life. I have my life, that is the biggest gift, and it’s all down to the surgeons for saving my life and getting rid of my colon that had had it in for me for so many years and was determined to destroy me. It was taken out just in time and for that I am forever grateful, so so lucky.

My life with Stacey as part of me has already become something which I embrace & the changes I’ve had to make to my day to empty my bag etc have pretty much become a routine now to the point where I don’t even really think about it, I’m on auto-pilot.

WELL DONE @ 1 MONTH STACEY 😀 Here’s to many more accomplishments!

4 weeks & 2 days since surgery.

8 Sep

Technically seeing as it’s 00:53am, it’s the 8th September & a month tomorrow since I had my panproctocolectomy. It’s amazing how different my life is now than it was 4 weeks ago, 4 months ago, 4 years ago…14 years ago just as I was starting with my Crohn’s before the age of 7 when I was diagnosed. If it wasn’t for my surgeons 4 weeks ago, I most likely would not be here to write this now, so I am forever extremely grateful, I have my life! 🙂

This week I have achieved many more things in my recovery and have been a lot more mobile. I’ve been taking short and slow walks into town and back to Tesco to buy food with my boyfriend for my recently found fantastic appetite & love of food (something I never thought would happen to want to eat food after all those years of hell and struggle and pain when I ate and putting weight on with steroids just to lose it all again and more), I’ve been spending way more time out of bed, helping with cooking, went on my first train journey post-op, enjoyed my first Cheeseburger since surgery from Burger King, had my first day out & continued on with the flat/house hunting for me and my boyfriend with my boyfriend & family that we started before I fell seriously ill a few months ago. I managed to sit in the car & enjoy rides out with my Mum, walked round Tesco & Morrisons with her in the past week and a bit for the food shop, & today we went to McDonalds Drive-Thru where I enjoyed a Plain Double Cheeseburger & Chicken Nuggets – Both which would have given me grief before my surgery for days on end. I’ve started planning things for a month or so’s time to do with my girls, I can’t wait, my life is getting much more back on track 🙂 Most of all, I have ensured I have rested when my body has told me, but also given myself a little push when my mind knows I can do it, I’ve been finding the balance between what my mind wants to do and what my body can cope with at the moment 🙂

My boyfriend and I, after much stress and many letdowns, have finally found our first place to rent, which makes me so content and stupidly excited! This means as from the 19th September I will be gradually moving in with him until I live with him full-time pretty much for University in the City where our flat is in September 2012 🙂 I will definitely do a blog for my boyfriend as he definitely deserves a mention, but words just cannot describe how much he means to me, through thick & thin he is there for me & cherishes me & loves me for the person that I am ❤

Going to see my Stoma Nurse this afternoon at 14:30, I have a feeling she will be really pleased again fingers crossed! 🙂 I have a little bump on one side of my stoma which has come up since I had my stitches out, it looks like a polyp and is the same texture as my stoma like the inside of our mouths and she said she doesn’t think it is anything to worry about, so will be finding out what is going to be done about that, probably frozen off or something or just maybe left I’m not sure, we shall see! Managed to put about 3/4 pounds on in weight since I left hospital around 3 weeks ago, so I’m hoping this will continue as I have quite a way to go before I reach a healthy weight – I will get there! 🙂

Hope everybody is well and has had a good week since I last posted 🙂

Everybody should be proud who has achieved even the tiniest of things, let alone those who have been courageous and continue to be courageous and brave every day battling illnesses and show positivity and the will to push through even the worst of times! Every single one of you is an inspiration. One person especially who has inspired me greatly is my good friend Meg Price, we only started talking a few weeks back, but she has given me much advice, strength and the courage to get through my down days. She has said many wonderful things to me which have helped me to feel happier when I have had my down moments, & she recently completed a 12k walk and raised hundreds of pounds for The Colorectal Research Fund & those with Crohn’s & Colitis. AMAZING. She is so brave & shows such strength & always manages to help others besides having her own problems to deal with. She is such an inspiration and I’m so glad to be in touch with her. Check out her blog: http://www.stanleystoma.wordpress.com 🙂

Night night everyone x